Advice Please (and Thank You!) :/

[Katie-Noise]

Hi everyone!

First . .  thanks so much for being so cool on here! I hope you don't mind me popping in for a second. I have found so much helpful information on here just browsing!

So my story echoes a lot of what I have read already. I have a history of dizziness. I get this weird thing where everything in my head kind of closes in and I feel faint too. Kind of like white just before you faint? Along with just general dizziness, I was dizzy every day for a lot of months but it just stopped about 4 months ago or so.

I have had Pulsatile Tinnitus for about 3 months? It comes and goes, when it's bad its BAD. It is only in my right ear. If it's not that I have high pitched Tinnitus.

I have a full feeling in my ear all the time, and pain or like aching behind and in? my right ear sometimes down my neck. Shooting stabbing pains IN my ear and on the side of my affected ear. It super badly hurts but doesn't last that long.

When I used to get dizzy I was getting headaches every day, now just every now and then.

Oh also weird pressure issues, some days both my ears are popping and unpopping all over the show. (Is this at all common with an AN or could this point to something else?)

So those are the symptoms and from that I am sure a AN could be suspected, but also I am aware it could be a number of other things??

I went to a hearing doctor last week. I SINCERELY thought he would say that I had some ear wax and that's why I was getting the whooshing sound. But no, clear as a whistle. I also have slight, not dramatic but definitely worse hearing on the right side (from the tone test). Also my right ear drum is pulled in.

Okay so something was up so I went back for a full test.

Still could be anything right?

I did the tone test again. Same results. I did the voice recognition test and it was absurdly low with my right ear.

Only this morning after three days I have suddenly remembered all the times I have had to go "WHATT?" and "OH MAN I SWEAR I AM GOING DEAF" and the long running joke with me and my ex boyfriend (who was 12 years younger than me) about my old age hearing . .  even though I am 35. Sigh. haha.

Then he did the next standard test, I am sorry I don't know what it is called. It is to measure the reflex from your brain to the muscle (and bone?) to send messages to your ear drum to retract in response to loud noises. With the one sided headphones and pressurey thinger probe.

I failed it miserably. There was basically NO response in my right ear.

He said from those results it ruled out an inner ear problem. (Somehow?)

The last one is the one that I am wondering about. Is this is a common thing with an AN, or does this mean it could be something else? Or does this mean it very much could be an AN?

Up to this fact I feel like it could be just 'something else' I don't know what. . any light please shed!

Thanks to you guys, I am actually not as scared as I could be about the prospect of it being an An. As I have heard. . .  if you are going to have a brain tumor. . you want this one.

ANY help would be lovely. Are these symptoms typical of anything else??? Does it mean anything specific?? Could it just be nothing at all?? :/ Although I am clearly going deaf so I don't see how it could be.

Thank you so much for your time. Sorry for the epic tale!!!

I am literally sitting on redial waiting for the specialist to open so I can book an appointment.

Oh also. . I know that I need to ask for an MIR *with contrast!*

xx Katie

[arizonajack]

An Acoustic Neuroma causes damage to the hearing and balance nerves.

Your symptoms and loss of hearing is likely to get a resounding "yes, you could have one" from our members here.

An MRI with contrast is absolutely your next step. Git-R-Done ASAP.

Then you'll qualify for membership here in the club that nobody wants to be a member of. You'll be entitled to a membership card, a secret decoder ring, and a ride in the Starship Schwannoma to explore Brain, the Final Frontier.

Yes, we do look upon our condition with a bit of humor.

[Katie-Noise]

Thanks for your reply!

I chanced upon a cancellation and got in to see a specialist this morning!

He did the usual checks, and yes of course I need an MRI.

He also put a camera up my nose without telling me it would DOUBLE the consult fee. I only learned it cost anything when I went to pay. A bit grrr about that!

So apparently I have to wait 2-3 months for an appointment at the hospital or pay a whole bunch to get it done privately (obviously) . .

So now I forget about it and wait I guess??!

xx

[PaulW]

Not sure what an MRI costs where you live. Might be worth shopping around.
While the latest wiz bang machine will set you back about US$900 in Australia the older machines which are still capable enough for identifying an AN costs $320. That's the outright price no healthcare or any govt subsidies

[caryawilson]

Don't kill yourself thinking about this.  Yes I agree tinitus, balance, hearing loss are all signs of an AN. However, I was initially diagnosed with Otosclerosis to describe my hearing loss.  In the end, an MRI will determine if you have an AN.  I know it's hard, but consider that these are rare, try not to get bothered until you know for sure.  (who knows, you may start giving yourself symptoms).

I'm NOT sure which country you are located, or the insurance.  In the US, you can normally go to a third party MRI, and they will work directly work with your insurance company.  You will need the doctor to give you a prescription and you can call around looking for an MRI that can see you quicker.  In a couple hours you should be able to get an appointment the next day.
 

[Katie-Noise]

Thanks for your replies! I had definitely stopped thinking about it. . .as much as I could with the constant whoosing and weird things that happen in a loud environment. I can't help but block my good ear every few days and be marveled at the difference though I have to admit. . but regardless I have stopped worrying.

I rung up this morning to check on my referral, and got told I would get my appointment date in 2 months. Not my appointment but just the DATE. Phhew lots of time away! I cheekily asked if they ever had any cancellations and that I can come in with little to no notice  . . . . now I am booked in for tomorrow.

I am sure it will be nothing, from what I gather it really is uncommon huh. However if I did happen to join your club (the one no one really wants to be in!) then I would be happy to know you all existed. xx

Thanks again!!

[stacey4574]

i HOPE EVERYTHING TURNED OUT WELL- i DON'T SEE ANY ADDITIONAL POSTS.